Still no idea what’s wrong with me

[789B]

I’m not really sure where to go from here. Approx 5-6 months ago I started having dizzy episodes that became more and more frequent until it was constant. I’ve had days of not being able to get out of bed, it’s been that bad. I saw 3 different GP’s for it, they did bloods, blood pressure, vertigo tests, neurological function tests. No answers so they just said ‘there’s nothing we can do for you. We could refer you to ENT but the wait is over 12 months’
So I went private to see an ENT. He did lots more tests, couldn’t find anything wrong with my ears, even did an MRI. Still no answers.
I’ve also seen an optician and updated my prescription just in case it was that. No difference.
I have a non functioning thyroid due to radioactive iodine treatment over 10 years ago. But according to blood tests, it’s correctly managed with my medication.
Other symptoms that may or may not be related to the dizziness:
Extreme tiredness
Brain fog
Bloating
Stomach aches
Night waking/Night sweats

I’m mid thirties and they’ve checked my hormones so I don’t think it’s pointing to menopause.

I’m happy to use my private insurance to see other types of doctor but no one seems to know what type of doctor I need to see.
Can anyone help me identify this?

Has labyrinthitis been ruled out? I mean, it's so blindingly obvious in your case that I'm sure it has, but I can't see that you have mentioned it.

https://www.nhsinform.scot/illnesses-and-conditions/ears-nose-and-throat/labyrinthitis/

Have you had your cortisol levels checked/checks for Addisons disease?

Has POTs been ruled out OP?

Labyrinthitis has been ruled out yes.
Cortisol hasn’t been checked as far as I can tell on the blood test results from September. I can ask about this in January.
POTS - I don’t think it’s that as it isn’t made any worse by standing or any particular activity. I just feel crap all the time.

When I first got dizzy - I was dizzy for 6 months consistently (only time I felt ok was when I was asleep). I was also diagnosed with an underactive thyroid during this time but the medication and getting my levels back under control didn't change my dizziness. It looks years to get a vestibular migraine diagnosis (attacks can last for months). Interestingly post COVID I now think I might have histamine issues too (lots of gastro issues and also struggling with palpitations and tachycardia). My TSH levels are also not as they should be but I'm reluctant to increase my dose of levothyroxine due to the high heart rate and palpitations.
I think exploring a histamine connection is a good thing to investigate (lots of people have struggled with this after having COVID) but I also wouldn't discount vestibular migraines (they very different from traditional migraines)

Are you on any other medications OP?

The symptoms you describe are exactly what I get if I’m distracted and poorly compliant with my SSRIs. That’s a bit random but thought I’d mention!

Your symptoms could be caused by so many things, from nutritional deficiencies, autoimmune conditions, migraine, premature menopause, endocrine issues, MCAS as previous poster mentioned. I have a friend with MCAS and Ehler’s Danlos, who has similar symptoms to you.

Have you been screened for pernicious anaemia by the way? I mean, I’d expect that to show up on a full blood count if one was done, though.

I felt exactly like that when I had neuro issues post covid for around 10 months - it was as if I was a bit ‘faraway’ - almost like you were going to faint - I did have other issues though , a lot of pins and needles in feet, back of the head headaches and occasional buzzing in legs and a finger - it started initially though with the weird ‘heady’ feeling . Took 10 months and a course of beta blockers to eventually calm down

This might sound stupid but put all of your results and symptoms into ChatGPT. Create a project and add all the test results as source docs. Ask it to help you work through all the possiblities. Ask it not to bullshit you. Be really systematic. Put timelines in.

I was taking amitriptyline for years (for the insomnia) until this started then the GP told me to stop taking it in case it was causing the dizziness. I had a pretty horrific adjustment period when I stopped but that was back in September so it’s fully clear of my system now but I’m back to not sleeping which can make my other symptoms worse. It’s a never ending cycle!
Anaemia has been ruled out. All my vitamin levels were really good on the last bloods.
The only medication I’m on now is levothyroxine and I’m very good at taking at the same time every day, never once forgotten.

Faraway is a great way of describing it. I try to explain the feeling to DH and he just looks at me like I’m speaking a different language.
Were your symptoms caused by a high heart rate? Mine is bag average but I’m definitely getting palpitations. I don’t have any of the other symptoms you describe though.

Thank you, great idea. I have been asking ChatGPT quite a bit but it usually just tells me I have an inner ear problem even though I tell it I haven’t. It’s great though for explaining blood test results. Great idea though to monitor the timeline using it. Thank you

Is your vitamin D at top of range and what dose do you take?

The test result says vitamin D3 is 69 and anything above 50 is deemed sufficient. My multivitamin says the D3 is 200% of RDA.

Ok, so the timeline doesn’t fit with solely antidepressant withdrawal but if you stopped it suddenly without a taper it might not have helped! Especially if you’ve been on it for years.

i dont have an answer for you but I hope you find one, as it sounds really unpleasant.

What's your bmi? You have a low resting heart rate, I wondered if you have any possibility of low weight as a cause of this?

Hey, just to let you know, there is a “main” thyroid test that’s done by the NHS, but to fully check your thyroid, you need to test a few factors, like both T3 and T4. My understanding is that if just one of them is low, you can feel like absolute bollocks. I had to have mine tested this way and turns out I needed 4x the dose of levothyroxine that I was on! So if you are really low in one area, just trialing the “top and bottom” doses of your meds might not be enough.

They used to test my T3 and T4 but they only bother doing TSH now as NHS guidelines tell them to just base dosage off that now which I know is crap. I’m in a lot of thyroid groups and in USA you can be prescribed natural desiccated thyroid which is basically T3 and people say it’s a life changer but you just can’t get it in the UK. We are a T4 only country. There are apparently a limited number of endocrinologists here that may prescribe it but it’s so expensive and I believe you have to self fund it at about £500 a month!

BMI is bang average. I’m about 9st7lb and 5ft6in
Genuinely amazed though that I’m maintaining weight as I have zero appetite and I eat about as much as a small mouse would eat!

SHITE! I didn’t realize that; sorry! But it’s also absolutely insane. Unfortunately, a lot of health systems just think levothyroxine is a one-size-fits-all. I’m seeing the endocrinologist in January; I wonder what they’ll say to me as I’m a hot mess endocrinologically! I hope you can find a solution. ♥️

🤣 me too! I do think there are so many downsides to the NHS being fully state funded. It’s so sad when you can’t get the treatment or medication you need because it’s too expensive. The American system is obviously too far the other way but if your insurance is good, you can get whatever you need! There must be some kind of middle ground here

Hi op, yes I had many of the symptoms listed but not 50%. I was simultaneously diagnosed with CIRS and the MTHFR gene snp, have lots of other chronic presentations that could fit multiple diagnosis.

NHS did not work for me support-wise, the main test is a serum tryptase during an acute flare (2-3hrs max after onset). Then it is a clinical diagnosis (ie one of excluding other diagnoses).

The NHS suggested I seek my own immunologist. Instead I sought out an integrative/functional practitioner well versed in MCAS.

Low histamine diet helped, as did correct supplements to help stabilise my mast cells and support detoxification pathways (poor due to m the MTHFR gene snp which is common in many people with MCAS). Finally, and the biggest thing for me, nervous system support and retraining.

Hope this helps.

I had this for months. Permanently lightheaded. Couldn’t drive, couldn’t work. Scans negative but ENT tests (v-hit test?) diagnosed bilateral vestibular hypofunction. Several weeks of vestibular rehabilitation exercises started by a balance physio slowly cured me. Also during COVID. Also had palpitations. Also had inappropriate sinus tachycardia.